...And in the air, the fireflies, our only light in paradise. We'll show the world that they were wrong, and teach them all to sing along; singing Amen I, I'm alive. Amen I, I'm alive...

- Nickelback, If Everyone Cared

For All The Right Reasons Album



And I'm singing Aaa-ayyy-men, I'm alive!







William Leonidas November 12th, 2009
My only regret is that I cried so many tears while I waited for you.


"...I'll try ~ but it's so hard to believe. I'll try ~ but I can't see what you see. I'll try and try to understand the distance between the love I feel ~ the thing I fear ~ and every single dream. I can finally see it. Now I have to believe all those precious stories. All the world is made of faith ~ and trust ~ and pixie dust. So I'll try ~ because I finally believe. I'll try ~ because I can see what you see. I'll try, I'll try ~ to fly..."

Jonatha Brooke "I'll try"


Fear thou not, for I am with thee; be not dismayed, for I am thy God; I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness. Isaiah 41:10




Now the word of the Lord came to me saying, "Before I formed you in the womb I knew you, and before you were born I consecrated you..." Jeremiah 1:4-5




For Thou didst form my inward parts; Thou didst weave me in my mother's womb. I will give thanks to Thee for I am fearfully and wonderfully made; wonderful are Thy works, and my soul knows it very well. Psalms 139:13-14



Monday March 5th, 2010

So Why Stinkerie?



It's simple, really. It's the first thing I whispered against my newborn little Dumpling's temple as I held him alone for that very first time. "There's my Little Stinkerie." And all was right with the world as I brushed my lips across his delicate dewy soft newborn-pink skin and sniffed at his sparse smattering of downy soft hair. Corny and sappy, huh? I can't help it when describing my new Little Puppy. But don't get used to it - I have been told I am "irreverent."



Anyway, it just came out and he's been Stinkerie ever since. As well as Stink Pie, Stink Pot, Stinkey Pete, Little Stinks, Stinks, Puppy, Ducky, Baby, Baby Head, Baby Head Jenkins, Jack, Jack-Jack, Jackie Boy, Jax, Snork, Snorkis, Snorkle, Billy Boy, Billy Bob, Bobby Sue, Billy-Joe-Jim-Bob, Will, Willie, Willister, and the name given by my mentor turned friend Beth - Snake. When I write to her I call him either The Snakester or Slither! And of course, Dumpling, because he is my Little Dumpling - warm and soft and comforting. It's alright to combine comfort food with baby names, right? Have you ever watched the movie Where the Heart Is? If you have, you'll know why I mention this in my defense!



Long story short, you're likely to encounter any one or more of these names in a single post. Because I can. It's my blog!





Something to Consider

Bad decisions make good stories.

Something to Think About

With any pregnancy, there are concerns. With any child, there are worries. When you have a diagnosis of Down syndrome, you know what to worry about. You know what to look for. You have a plan of action. With your typical child, there is no limit to the things that can 'go wrong' or 'happen.' There's no place to focus your worry and concerns. 'IT' will always be out there, waiting. You'll always be on guard. Even when the child is 55 and has grandchildren. With Down syndrome we have a battle plan. With Down syndrome, there is a finite number of things that can go awry. With a typical child, there's isn't. It's a crap shoot. I'm sticking with the Ds and taking the other two back to the hospital for a refund.

Head Above Water


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Sunday, April 24, 2011

Weight...

We've been stuffing The Jax-Snack full of every high calorie, high fat item we can think of. When I say we, I mean his nurse Katee and I. He gets egg yolks and avocado for two of four spoon fed meals a day, yams loaded with full fat butter, egg yolks with hollandaise sauce, almond meal mixed with coconut milk yogurt, egg yolks with butter, flax seed oil in everything it can be disguised with, oatmeal with butter and local honey, some variety of yogurt with every meal...you name it, we've tried it. Tonight for Easter dinner he had mashed potatoes loaded with butter, just a bit of gravy, stuffing loaded with butter and at least a half cup of sweet baked beans. He really enjoyed the baked beans and I think the best part was sitting up at the table with the whole family for dinner! I toyed with the idea of grinding up some ham too, but he spit out every tiny piece that I tried to slip into another bite of food. For all of this effort, we've gotten tons and tons of dirty diapers. Last week he weighed 20.02 pounds. This week he weighed 20.04. I guess we're attacking this weight loss issue by gaining 1/3rd ounce at a time. At least he seems to be genuinely enjoying the new variety of foods in his diet! Please, do add any high fat, high calorie ideas you may have!

And I promise to post Easter pictures soon!

3 comments:

Csunshinegirl said...

I agree that is a pretty low weight gain for all that you have been feeding him. Have you had his thyroid tested? Also what about blood levels for type 1 diabetes? Not to scare you, but at least get it checked to rule it out. And then keep on doing what you're doing.

jesshaydel said...

20 pounds sounds healthy to me hahaha
Sky is 3 and weighs 25 pounds I swear shes stayed that consistently for a year! She only get taller. We try every high caloried food there is and I swear it comes right back out of her or she runs it off! I know being small is a part of her symptom but it always worries me. Sky had her thyroids tested and she as find, but honestly I dont find 20 pounds to be small for a 2 year old. As long as he is taking the food in and not losing weight Id say thats a great sign!!
Sky eats like a bird and just picks here and there, she loves mashed potatoes with loads of sour cream and butter, she loves vegetables while there not hte most fattening I tru to put spoonfulls of brown sugar over carrots and butter while simmering them. Eggs.... hhmmm Ill keep thinking for you

Tracy said...

Chris,
Yes, his blood draws are always good...and I get the actual results, I'm not content with "Everything's fine." Thanks for all the great ideas! We've been using them! Got anymore?

Jess,
There's the rub and that's why I'm concerned...he lost a full pound over about 6 weeks...so we're trying to fatten him up! Any ideas will be appreciated!